ERN-RND – Page 10 – ERN-RND | European Reference Network on Rare Neurological Diseases

New FTD website by FTD talk team

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SCA & ARCA Global Online Conference 2020 – Abstract submission

Continue reading “SCA & ARCA Global Online Conference 2020 – Abstract submission”

Webinars on Leukodystrophies by ELA Deutschland

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Results of EFNA’s survey on stigma & neurological disorder

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EURORDIS Winter School 2021

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22 July 2020 | World Brain Day

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Share4Rare – new international patient registry for COVID-19

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2020 CEF Telecom call – eHealth open

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EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)

Continue reading “EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)”

#BrainLifeGoals campaign on World Brain Day 2020

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11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience

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14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes”

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NEW ePAG patient advocate for Leukodystrophies from Germany

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9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia”

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Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia”

Continue reading “Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia””

ERN-RND July 2020 Newsletter

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SCA & ARCA Global online Conference – registration is open

Continue reading “SCA & ARCA Global online Conference – registration is open”

30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia”

Continue reading “30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia””

30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies”

Continue reading “30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies””

EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data”

Continue reading “EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data””

Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2”

Continue reading “Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2””

18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation”

Continue reading “18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation””

18 June 2020 | Webinar “A data strategy for the European Reference Networks”

Continue reading “18 June 2020 | Webinar “A data strategy for the European Reference Networks””

Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant

Continue reading “Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant”

15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting

Continue reading “15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting”

16 June 2020 | Webinar “Advancing the rare disease research agenda”

Continue reading “16 June 2020 | Webinar “Advancing the rare disease research agenda””

EPNS 2021, abstract submission open

Continue reading “EPNS 2021, abstract submission open”

6-9 June 2020 | ESHG 2020.2 – Live in your living room

Continue reading “6-9 June 2020 | ESHG 2020.2 – Live in your living room”

9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS

Continue reading “9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS”

NEW Euro-HSP Facebook page

Continue reading “NEW Euro-HSP Facebook page”

Meet us at EAN2025
June 11, 2025
Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the …read more »
Review on DBS for Dystonia
June 11, 2025
Despite considerable achievements in genetics in dystonias, their response to possible treatment such as Deep Brain Stimulation (DBS) remains to …read more »
John Gerbild elected as Board Director for EURORDIS
May 19, 2025
We are happy to announce that our patient advocate John Gerbild (representative for: Ataxia/HSP) is now a newly elected Board …read more »

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ERN-RND @ern-rnd.bsky.social 14 hours

#WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

#WorldBrainDay2025 #WorldBrainDay25
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ERN-RND @ern-rnd.bsky.social 7 days

Bye bye #EAN2025: meeting members and partners, introducing pur new postgraduate curriculum (hosted on eanCampus), talking about future projects, planning new cooperations - we had a great time in Helsinki and are looking forward to the #EAN2026 In Geneva! #EAN2026
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ERN-RND @ern-rnd.bsky.social 1 week

EAN2025 - #PublicBrainHealthDay #BrainHealthMission

I"f you could change ONE THING in the health care system for rare neurological diseases - what do you think is needed most and why?"

This is what our coordinator Holm Graessner would change first:

#ToBeContinued - more to come soon! #ToBeContinued
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Parkinson's Europe @parkinsonseurope.bsky.social 1 week

We're loving #EAN2025! Come to our booth in the Neurohood area - N18 - and say hello, and pick up some Parkinson's Passports (in six languages!). ❤️ 🌷

#Parkinsons #Parkinson ‪@ean.org‬
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ERN-RND @ern-rnd.bsky.social 1 week

#EAN2025 Come and learn more about our new online medical education programme - we are in the Neurohood, N21
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ERN-RND @ern-rnd.bsky.social 1 week

#Today: Learn more about ERNs and current practices on genetic therapies in Europe at 17.25 CEST in the Scientific Theatre - the talk will be held by Kleopas Kleopa and will include practices from ERN-RND and EURO-NMD European Reference Network for Rare Neuromuscular Diseases
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ERN-RND @ern-rnd.bsky.social 1 week

#EAN2025: Meet the ERNs at the the EAN Congress. Come and find us and EURO-NMD European Reference Network for Rare Neuromuscular Diseases at the booth N21 in the Neurohood!